Why do I write a blog on living with chronic pain?

I’ve been writing this blog since August 2006. Week in and week out I share with all of you what I am experiencing. Some days, when I’m feeling worse than usual, I ask myself, “Why do you do this?”

First of all, let me remind you of the medical reasons I have daily pain. I live with relapsing polychrondritis, which is a disease of inflammation and destruction of cartilage throughout my body. For many years it was simply labeled lupus like syndrome because it is very difficult to diagnose. I also suffer from mixed connective tissue disease which sort of encompasses many of my problems. I have had pain in my sacroiliac joints for many years, pain in hips and knees as well as destruction of my ankles with accompanying pain. I have arthritis in several joints although I do not test positive for RA. I have had cardiac involvement with irregular rhythm and fast heart rate, also known as tachycardia. I am extremely photosensitive, and was, even before I started taking many of the medications that can cause this problem. My problems with the sun arrived with my pain. My tolerance for heat seemed to disappear leaving in its wake, a miserable rash wherever I had been exposed to sunlight.

Photosensitivity is less of a problem in Oregon but it was extremely disrupting when we lived in the central valley of California. I had a wonderful little blue Mustang convertible, we had a ski boat and as anyone who has ever been there knows, it can get miserably hot there.

In my former life I was an RN manager and loved the entire field of nursing. I am married to a nurse, have a son who is a nurse and a daughter who is a speech pathologist. Dinner table conversation at our house used to be a bit gross at times, when the kids were still at home, I will have to admit. As they used to say on that old TV show Dragnet, “Just the facts ma’am.” Those are the facts.

Why do I write this blog? The answer comes from a personal place within my heart and mind. For me to share what I am experiencing somehow gives some value to the hell that my life was thrust into. Think of it as you will; lemonade from lemons, gold from straw, the glass half full, etc. It is my nature to look for the positive aspects of even the worst situation. I decided many years ago, if I let this disease process destroy my life, then my life was over. I am much too stubborn to lie down and give up. I don’t get paid to write this blog. I do it on a volunteer basis. I have been paid for my writing in the past and have been published in many areas such as newspapers, magazines, newsletters and college literary magazines. I began writing poetry and prose as a way to express the cauldron of emotions that began bubbling up inside of me. My life hit a brick wall and I had to deal with the aftermath of the crash. That’s why this blog is very personal for me.

The rules of life have changed for me. I was always very ambitious, went to nursing school when I was in my thirties and looked forward to a life of helping others, earning good money and basking in the warmth of a career I loved. Now, I will have to say, life is no longer about winning. It is simply about showing up and I’m proud of myself each time I do. It takes a mountain of courage to awaken each morning and know you will be greeted by pain. It varies in location and intensity, but it is always there. I wanted to have a place where others with daily chronic pain could “gather” and share. I have met many wonderful individuals: Kathryn, Lynlee, Barbara, Sandie, Theresa, Toni, Susan, KB and hundreds of others as the list goes on. My editor, Natalie, is a jewel. These individuals share with me as I share with them. The level on which we share is one that comes from being in the “fire” of life and living to tell about it. There is integrity to our sharing because, like soldiers who are in battle, we relate to each other. We immediately connect to each other across the miles of cyberspace as passengers on the ship of life, or perhaps it is the lifeboat of life. We’ve been down and we’ve bounced back up. We may be imperfect, altered, compromised and hurting but we still have merit, hearts, love and talents. Life with chronic pain can be very lonely and everyone needs someone who understands. We understand each other because we each show up each day.

For me, as a writer and a patient, finding all of these individuals has been like discovering gold. I am enriched by the experience of knowing all of you and hope that in some small way, my sharing enriches each of you as we each keep paddling this lifeboat we’re in.

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ABOUT THE AUTHOR

Sue Falkner-Wood

Sue Falkner-Wood is a retired registered nurse living in Astoria, Ore., with her husband, who is also an R.N. Sue left nursing in 1990 due to chronic pain and other symptoms related to what was eventually...read more